pooter18

i have the same issue.. i believe my levels were over 1300 when i went to mayo.. and i believe even the high level is about 400..my doctor said the adrenal tumors can be so tiny that they cannot be detected and usually there are several of them.. they cannot be removed or anything done about it...but due to my symptoms even though they cannot see them they are almost 100% sure i do have them...i was put on klonopin due to the high levels and they are down around 750 now...so i dont feel as anxious..but still have good and bad days..but with the tumors they make my heart so touchy for lack of a better word just sitting if they are listening to my heart and i barely move it will run faster..if you ever have them rechecked make sure your doctors office knows how to check them properly..mine does not so i don't even bother..the two times i have had them done they have done them wrong so the level was not accurate so the 750 probably is not right..i would probably have to go back to mayo or as a outpatient hosp visit to get them done right..best wishes

when i went to mayo i was told drinking to much water tea coffee can cause you to be dehydrated because they do not have salt in them and the more you pee the more salt you loose and your not replacing it by drinking those..i was told to drink G2 Gatorade and V8 ..so i drink a glass of each during the day along with the water and tea (decaffeinated only) and i feel much better and my labs have been great..i also eat extra salt on my food and sometimes will just grab a salty snack during the day for a just in case..my blood pressure readings have also been more stable. .so even though i was drinking a lot of water and tea and thinking i was doing myself good i was actually making my symptoms worse by deleting my salt ..learn as we go i never leave the house with out one of those little bottles of G2 if i feel by b/p dropping or get light headed i drink it and i feel better..i almost panic if i forget it and head for the nearest store and buy one-security blanket of sorts a little yellow to the urine is the best.. to dark and you need to drink fluids..sometimes i drink to much and mine is clear as water that is when i know i have drank to much and that is when i feel my worse..i have had urine test done when it was clear as water and it could not even be tested due to it being to diluted..so find a happy medium ..

i also went to mayo in Rochester 8 years ago..the worst part for me was they took me off all my meds 3 days before i went they said they wanted me as sick as possible to do the test so they could get accurate results without the meds masking them..not sure if they still do this..i ended up in the ER the night before we left the withdraws were horrible..i had so many test done couldn't even begin to name them.. they may add to yours depending on what they find along the way..the sweat test was the worst for me i did not complete it..i cannot tolerate heat or humidity and i could not breath i tried hard to tough it out just couldn't do it..they all are very nice and explain everything before they do it..i was there for a week started as 4 days turned into 7.. they know more about POTS and Dysautonomia now then they did then so you might have better results..i did find out several things that were way out of wack and thanks to them felt bettter after about 6 months..now i am having worse issues and now going to KU for a bunch of test..they wanted me to go back to Mayo but my mother-n-law lives with us and is on Hospice and we do not have anyone to stay with her that long...so having to spread my appointments out at KU in Kansas CIty over the month of July ..they are checking from the brain all the way down to see which organs are affected by the autonomic failure..having severe problems with digestion,swallowing,balance and more..and i have agreed to be a study project for them since it is rare and it is a teaching hospital..good luck you will be fine and amazed at all the test they do and how smoothly they get it all accomplished..and they have lots of places to eat right in the hospital and stores to look through if you have a lapse between appointments..shuttle buses to get you to different buildings..you should book a hotel that offers the shuttle bus to and from the hospital and they give you a better rate since you are there all week..best wishes

my feet are really numb..and i had a doctor poke me all over with a safety pin to check my nerves didn't bother me at all..he finally stuck himself and said yep it hurts..my husband just laughed at him..the only place i could really feel it was my face..my legs also get numb if i sit with my legs down even while riding in the car i usually have to put them up on the dash..

i also get a headache and nauseous with perfumes..if there is any way to get away from the person i will..the worse is someone who smokes and then puts on a ton of perfume to try and cover up the smell..i am extremely sensitive to smells

i itch constantly all the way around my jaw line feel like taking a brillo pad to it... !!!!!!!!!!! sometimes my arms and other areas but always my jaw ....drives me insane have tried just about everything to calm it down..wish i knew what was causing it ..no rash or bumps or dry skin just itches ...weird

i have a old phone no apps or alarms etc...just a lot of sticky notes...LOL i have tried to use the new phones but i cant remember how to use the thing even after being shown several times.. way over my head and memory capabilities unfortunately my memory fog is horrible ..i wish my brain would work gets depressing

i have a cane ..and i have a cane that has a seat on it..has come in handy many times..i also have a walker with a seat..and a regular wheelchair and a motorized wheelchair..depending on the day i have lots of choices..i have learned to get over what other people may think just by looking at me..i know how i feel and if i push myself i set myself up for a serious attack and then i cant do anything for days..do what you need to make your life liveable and bareable

i also do the iv therapy 1-2 times a week but i have to go to the doctors office i so wish i could do them at home ..i also dump my water and salt through my kidneys..i feel better after the treatment for about 2 days..i also cannot drink enough to keep the fluids in me i need so i drink more G2 and coconut water and V8 to off set the IV therapy..and keep my salt levels up..it is a never ending pr ocess and each day is different i adjust as needed depending on my heart rate and b/p..with my insurance going to the doctor office and it being an infusion i pay no co-pay and nothing for the IV..thank goodness or the offfice co-pay alone would break me..good luck

i have learned the hard way not to push myself ..i use to do it to keep up with everyone else so i wouldnt hold them back..but i have learned when my body tells me enough is enough listen..sit take a brake let the others go on..use a wheelchair or electric chair if needed..i just broke down and bought one..i have 19 grankids and would love to go to the zoo and other places with them but always declined because i knew i could not do it..events also make me nervous i never go by myself and i always go with someone who knows my limitations so they can help me if i get in a pickle..i always carry a G2 gatorade with me i never leave home without one..i have declined events and outings with my grandkids due to knowing i couldn't physically make it through it or knowing i would be sick for a week afterwards trying to get my body to recover...you have to do what is best for you and your health..best wishes

i will definately check into all of this i wish i liked avocados may have to learn to like them...i will find out tomorrow more from the doctor but i will ask about the senna ..my small intestine seems to be fine..its the large intestine that everything backs up in..even when i drink a bottle of the magnesium sulfide for most people it works in 1 hour for me over 24 hours and that is combined with duolcolax also..and i usually have to do it 2 days in a row to get some relief..depends have become my worse friend LOL i hate them but i am so afraid if i am out in public which is rare anyway due to POTS and DYsautonomia that out of the blue it may decide to work and when it does i cannot control it..i will have to look that diet up as well..thanks for all the tips i will take the info with me tomorrow and see what he thinks..

i have troubles with anxiety also..at mayo they found my norepherine levels to be 1275 i believe in a normal person 400 is high...(don't quote me been long time since i looked it up) ..they finally put me on klonopin and it droped to 725 which is still high but better..i think pots messes with a lot more things than they realize..my anxiety is better i still have some bad days..plus when my heart rate decides to race it increases the feeling of my anxiety..constant battle to keep everything stable..yeah right i dont think i have had a stable day in over 10 years..i guess as stable as we can feel...i tried some of the newer drugs but due to sensitivity to meds the side effects were horrible.. the klonopin which has been around forever worked the best and no side effects for me..good luck best wishes

i got mine the first time on my own no lawyer..one of the lucky ones...and it was before i ever went to mayo..but my doctor was the one who told me to file and i had pretty good paper work...even after i was awarded disability due to my age at the time they refused to give it to me untill they reviewed my case again..which made me mad because i lost my house due to the extra two months it took..but again they gave me the disability..they send me papers every 3 years to fill out..and if they want to review your case they will contact your doctor..they have not done that to me yet.. again i usually have a lot of paper work to back me up..i have heard they reject about 90% of cases the first time hoping you will just forget it..with a lawyer i don't think i have heard of anyone not getting it..not saying some haven't ..good luck..long process. and i am glad really now that i lost my house and had to move because i love where i live now and will never move again my house is paid for and no one can take it from me...

i will definately discuss this with him thursday when i go..i am just so tired of not being able to eat or go to the bathroom that it is effecting my quality of life at this point..when it won't come out makes your body toxic and i am always nauscious..thanks

i gues the proper diagnosis is MSA- am looking for someone out there that has autonomia systems atrophy /systems failure that i can talk to to get some information from..i was just diagnosed with this 4 months ago..i have several things giving me problems...my digestion is the biggst problem at the moment i am on my second round of sitz marker pill test to check motility which is horrible..the first round all 24 were still in my colon not a surprise since i cant go to the bathroom even with tons of medications.. and so far with this second test all 24 are in my colon as well..go to the GI doctor thursday to decide what to do..i am looking for someone who maybe has already had this done and had to have surgery or another solution since that is what he has mentioned i will probably need.. ( either a colon resection or a colostomy bag)..and some honest answers of what is to come next..my cardiologist never discussed any of this with me and i dont look much up on the computer so i had no idea this could happen..i cannot find a specialist around me without driving a long ways which i cannot do..so if anyone out there is willing to talk to me and discuss their journey i would greatly appreciate it..thanks i take meds to control my heart rate/ blood pressure at times runs high and then will drop really low so take meds to control that/ get IV's 2 times a week my kidneys dump a lot of my water i can fill up 2 of the jugs in a 24 hour urine test /nausea meds so i can eat several other meds they took me off all the laxitives since they were not working to do these test i do the extra salt G2 gatorade and coconut water for electrolytes my balance and vertigo/dizzyness has been severe lately as well will probably address that next after the stomach issue gets resolved i could go on and on but my brain fog is getting the best of me so enough for now-thanks

wish i could just pick one but i have them all everyday ..but right now having terrible abdominal problems and having to have surgery first of may due to no motility in my large intestine due to dysautonomia so probably that right now..we can't just have one or two symptoms to deal with we have to have about 30 or more to deal with and you never know what tomorow will bring you..hope everyone is as well as can be..

i was a nurse and had to give up my career due to fatigue..brain fog..and being on my feet for so long ..and always just feeling ill..was working one day went to the doctor and due to my condition at that time he told me i was done..i am not one of the fortunate ones whose condtion got better mine has deteriorated..since your son is young i hope the best for him..

i bought a dyautonomia sweatshirt size 14-16 thought it was a womens size.. but it was a youth shirt...after washing it it looks like it would fit a size 10-12 youth..it has blue boxing gloves on it and says fighting against autonomia..the site i bought it off of gave it to me for free since i re-ordered the right size i needed..so wanting to pass it on..if you want it please respond to this post so others know it is already gone..then if you click on my name to the right of the actual post you can send me a message and i will get your address to send it to you..hope someone can use it..

my doctor never had me taking it on a daily basis..i can tell if my b/p is droping and then i take 2.5 mg if it doesn't come up in hour or so i take another 2.5 but that is about all i need anymore..i drink lots of fluids and G2 gatorade and extra salt and i get Iv's weekly that seems to work better than the meds..i maybe have to take it once a week now instead of daily ..plus it was so expensive it was putting me in the donut hole about september..i was in the hospital last week for problems related to dysautonomia and my b/p dropped to 80/54 they could not get the midrodrine but i had some on me so they let me take it..so it must be getting harder to come by glad i don't have to take it as much now..hope everyone has a great weekend

i found these videos on POTS and Dysautonomia by a specialist who does yearly seminars and conferences at hospitals but here is the website www.dysautonomiainternational.org hope i got that right should get you close very interesting new findings and studies if you can't find it here are the doctors names Dr. Paola Sandroni and Dr. Satish R. Raj

who ever you went to is not up on POTS they have found that you do not have to pass out to have POTS that 99% of the patients just have the feeling of passing out but do have a increase in hear rate and after being upright for about a minute they cant stand to be on the table and want off..we have troubles standing in one place let alone straped to a table..here are some great seminar videos on the topic there are 3 that come up first on the screen watch the bottom one first...the finding now are differnet than when i went Mayo 8 years ago and i believe a lot more people would have been diagnosed properly had they gone by these new findings..but so little is known i guess and they are learning all the time..i just found these videos this doctor does yearly seminars on POTS and Autonomia i have not watched all of them or even the complete first one but just the frist few minutes was very interesting..plan on watching them next weekend when i have the house to myself..hope this helps www.dysautonomiainternational.org

i inherited a 6 year old dog..i am not a dog person per say..but i have to say it has been the best thing for me being cooped up in the house..he is not a barker unless someone is at the door then he thinks he is protecting me...he is very smart and can learn a new trick in seconds..he loves to ride in the car which has helped me get out of the house a little more instead of being a hermit..i do not suggest a puppy to much work..i would find a older dog possibly trained or at least one that minds that you can work with..mine is a lap size dog about 25 lbs.. i do not prefer big dogs afraid they will knock me down due to balance problems..he loves to snuggle and knows when i am having a bad day will lay next to me all day for support..he also is able to go all night with out making a bathroom trip (unless he eats something he isnt suppose to then we might have a emergency night trip)..i also have cats which i am a cat person but they have a mind of their own and only want to snuggle when they want to..mine is a mix breed ..he is great and i am glad my sister-n-law left him with us when she moved he is my buddy my mother-n-law lives with us and is on hospice and he will very gently crawl in bed with her and lay by her and check on her.. cutest thing ever..and makes her day

i was told at mayo to only do excericises that you can sit and do..i do not use equipment at all.. i do stretches and leg lifts and easy stuff on my bed in case i get dizzy i wont fall and hurt myself..better than nothing..i cannot do yoga i tried and kept falling losing my balance and was afraid i would get hurt..so just basic easy stuff for me..i do have a staionary bike i bought to try and help with circulation but i am so exercise intolerant that i can only do it for couple minutes right now at a time..good luck

it's a long hard road unfortunately to find the right doctor..even the cardiologist i have now does his best to control the symptoms but he is not a POTS expert..when i had the TTT done my heart was racing at 146 so they did not inject the medicene they were suppose to.. and i was not suppose to take my heart meds before the test.. but do the heart rate they had me take half a dose so to say the least mine was not done right either.. but they did conclude i had POTS /sinus tachycardia/autonomic nervous system dysfunction based on symptoms and all the other test they did at MAYO..i started having symptoms when i was 27 i am 50 now and just now have found the right team of doctors ..they are not experts and we learn along the way but they do everything they can think of to keep me stable and out of the hospital..so i am blessed for that..i do wish i had a expert though to tell me what is to come or what could possibly happen worse case..or what they have seen in other patients with POTS..but i have done this day by day for over 20 years and they let me adjust my meds as needed since every day is not the same..i think the biggest lesson i have learned in starting new meds is they to start at a childs dose and titrate up..don't know about the rest of you but i am sensitive to meds and have to start small and find a doseage that works well for me..i learned that the hard way and ended up in the hospital twice before i got smart..everyone is different and the same things that work for me might not work for you..best thing is learn your body pay attention to how your feeling somedays mine changes by the hour and learn to adjust your lifestyle..some of you have to work and i feel for you not able to lay down when needed or put your feet up or even do the simple things that would make you feel a little better when you feel bad...i feel your pain and frustration..best of luck best wishes i could go on and on but my brain fog is getting the best of me so better go

my insides do the same due to high levels of ephinepherine (might be spelled wrong).. i take Klonopin to keep my levels down but they are still twice as high as should be..but better than they use to be..it also has helped with my OCD..i still have bad days where i feel jumpy irritable and anxious and nothing seems to work..last week was horrible !!!! sometimes no noise at all and a book will work for short time to calm me..but when you have other people in the house the no noise only works for a short time..good luck best wishes